A donor’s journey need not be a lonely one

Monday March 14 2016

Rita Muigai , who donated a kidney to her

Rita Muigai , who donated a kidney to her father, during the interview at Nation Centre on March 13th 2016 . PHOTO| CHRIS OMOLLO 

By WANGUI THUO
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On November 28, 2009, my dad, Evanson Muigai, was caught up in a shoot-out between robbers and police.

It was morning, and he was on his way to the garage when one of the cars in front veered off the road and hit an electricity pole.

He instinctively slowed down as he approached the accident site. A few seconds later, four men holding guns hurriedly got out of the vehicle.

He would later learn that they were robbers running away from police. At about the same time, the police, who had been a few cars behind, got to the scene, and a shoot-out between the two groups ensued.

Dad tried to drive off, but was shot, and his car went off the road, rolling in the process. He had been shot six times on his left leg and thigh, besides the injuries he got after his car rolled.

One of the complications from this ordeal was acute kidney failure, though we did not know it then.

He was admitted in hospital for a while, and seeming to recover, he was released to go home. Four days later however, he collapsed.

We rushed him back to hospital, where he was readmitted as he underwent tests to establish the cause of the collapse.

When we returned to visit him the following day, we found him going through dialysis.

Dad had been diagnosed with kidney failure, and thus begun his bi-weekly dialysis visits to the hospital.

Having diabetes and high blood pressure, and now acute kidney failure, he had to be very careful about his lifestyle, including his diet, and this he did. He even stopped going for dialysis after some time.

However, in 2013 during his regular check-ups, the doctor told him his kidneys were not functioning well.

He was put on medication and he started improving, so thankfully, there was no need for dialysis, which had drained us emotionally and financially.

PAINFULL PROCESS
In 2015, over the Easter period, I went to visit my parents. My father is light-skinned, but his complexion had significantly darkened, just like it had when the first diagnosis of kidney failure was made.

I instantly knew it was his kidneys. When I got a moment alone with my mother, I asked her about it, but she ignored my question and walked away.

This confirmed to me that my father was very sick. Later that day, he broke the news; his kidneys had completely failed, and a transplant was the most viable and long-term option. That was a very dark moment for all of us.

The decision to give my father, who I am very close to, one of my kidney’s if it matched was instant, I did not even think about it, and I told him so.

The doctor had told him that the strongest match would either be his children, brothers or sisters.

We started calling family, looking for volunteers. As you can expect, there were lots of questions from them, bearing in mind that some did not even know that such a procedure was possible. There was also fear of the unknown.

My brother was at the time working out of the country in a place where he could not access the extensive tests needed, so me, an aunt and a cousin volunteered for the tests.

The initial plan was to have all of us tested at the same time, but due to cost constraints, it was decided that me and my dad go first.

I prayed day and night that I would be a match because if I was not, that would mean starting the whole process again, which was very expensive and emotionally, physically, and psychologically taxing. Those were the two longest months of my life.

I struggled with negative thoughts, the recurrent one being that I might not end up being a match after all, in spite of all the money that we would spend.

Also, the entire testing process was extremely tiring. Some tests required an extended fasting period while some had to be done at a specific time.

I was also diagnosed with high cholesterol, and I had to go on medication to bring it down. I was shocked, because I am very active and lead a healthy lifestyle.

Apparently, high cholesterol can be hereditary, which explained my case.

EXPENSIVE
There was a lot going on in my life at that time – my job required me to travel once in a while, and I was also in school, studying for my masters degree.

It became so hectic that I decided to skip school for a semester, especially since I would be expected to pass by the hospital for more tests and check-ups on some evenings. It was quite a juggle.

The testing was thorough and intense. Each test has to match, from the blood to the tissues.

It was the longest two months of my life because the tests are spaced out, and for some, analysis was done outside the country, which delayed the results.

At some point, I broke down and felt I could not go on. I feared so many things; that I would not be the match my dad desperately needed, that should I be a match and donate my kidney, that I would develop complications. I also feared that I would die in the process.

I had the support of friends and family, and their love was overwhelming, in fact, sometimes, I felt as if they were feeling my distress more than I was.

Without taking anything at all from their unwavering support though, they had not experienced what I was going through, so sometimes my struggles would be very lonely.

The process was also very expensive. Insurers do not cover organ donation, but in a gesture we will always be grateful for, dad’s insurer agreed to cover Sh500,000.

One test alone cost us between Sh20,000 to 30,000 for each of us, for the same test; we spent more than Sh300,000 during that pre-surgery period.

We managed to meet the rest of the cost through a fundraising that was graciously supported by family and friends.

Two dominant emotions came over me when I learnt that the tests had been positive. I was relieved and anxious.

Relived that all this waiting had not been for nothing, and anxious of what lay ahead.

The testing for a kidney match is thorough and intense. Each test has to match, from the blood to the tissues. PHOTO | NATION MEDIA GROUP

The testing for a kidney match is thorough and intense. Each test has to match, from the blood to the tissues. PHOTO | NATION MEDIA GROUP

At the hospital, dad and I went through counselling, which was supposed to prepare us for the surgery and what to expect afterwards.

We were also expected to sign an affidavit of mutual consent to the surgery and meet the panel of about eight doctors who would be involved in the transplant.

On the morning of July 15 2015, it was on a Wednesday, I was wheeled to the theatre, followed by my dad.

I looked at him, and mirrored in his eyes were the same emotions churning inside me – anxiety, fear, and hope. We said a prayer before we went in.

RECOVERY PROCESS
When I came to after the surgery, I remember feeling confused as I tried to get my bearings. My concentration span was also affected in the weeks following surgery, but other than this, I have not had any negative reactions.

This is not to say this would be the same case for someone else though - post-surgery reaction is never the same.

My first thought after regaining consciousness was, “I am awake, is dad awake?”

All I wanted was to find out how was how he was. I was in theatre for five hours, while my dad stayed in there for seven hours.

I was wheeled to the ward to find my extended family waiting, and it was a very emotional moment.

The doctors informed us that though the surgery was a success, dad was in ICU, since they needed to monitor the kidney, which was susceptible to infection at that stage.

On the second day though, my need to see him was so overwhelming, that the doctors allowed me to see him – seeing him was intensely emotional, and I have never felt such joy.

I was discharged after four days and went home to begin the healing process.

The first six months after surgery are the most critical, so you cannot afford to exert yourself.

Being an independent person, I struggled with having to rely on others for almost everything as I healed.

After the surgery, I went to live with one of my aunts, since my mum would not have coped.

Had I had an opportunity to speak to another donor before the surgery, perhaps I would have coped better. I just had not been prepared for the changes and adjustments awaiting me.

During the first three months, I tired very easily and had intense headaches in the afternoons. I also could not go up the stairs, cook, lift heavy stuff, do laundry or even drive.

One night, one side of my body went completely numb, and scared, I dragged myself to the door to get help, and at that point, I have to admit that I regretted my decision to give my kidney, wondering whether I would pull through.

During those six months, I went through an emotional rollercoaster, thinking about my future and replaying ‘what-if’ scenarios.

What if my remaining kidney failed? Would I get a donor? That is still a fear to-date.

CHECK-UPS
I also thought about future plans, such as starting a family because carrying a pregnancy is also a major ask on the body.

Thankfully, I had very supportive doctors who have been readily available even after the surgery when I needed medical advice, and this is important support for a donor to have.

I should also add that if you have diabetes, please go for regular kidney screening, no matter how well you believe you are taking care of yourself.

I feel I pushed myself too much, too soon. I am a planner, and like to stick to my goals, so I went back to school soon after surgery, and to work as well.

Juggling both pushed me to the limit. I truly thank God I didn’t develop any side effects, so I strongly advise one to go back to one activity at a time.

Take care of yourself and also remember that internally, your body is still recovering and adapting to the change it has gone through.

My life is back to normal now - I am back to work and school, and I am as healthy as I was before the surgery.

One of the few things I am not allowed to do though is take over the counter drugs, every medication I take has to be prescribed, so every minor illness requires a hospital visit.

Dad is doing well, and his body has accepted my kidney, though he still goes for tests every other day, and is on long-term medication. We are very happy with his incredible progress.

Before my surgery, I tried looking for other donors to connect with, but did not find even one, so mine ended up being mostly a solo, blind journey.

Doctors need to speak up more about organ donation and connect donors to one another.

As my dad and I look forward to give thanks on our one-year anniversary this July, I have heard it said that after five years, the recipient will likely require another kidney.

It is a saddening thought yes, but the bigger picture is that my dad will have had five more years of life.

I would really like to walk the journey with would-be donors, share my experience with them and also sensitise Kenyans about the importance of organ donation.

Most of us are buried with healthy organs that we could offer the living and prolong their lives. We truly need more organ donors to sign up.

I have been talking to various foundations, hoping that by the end of this year, we will have an organisation that will not only be a resource centre for would-be-donors, but one that will be vocal about the

importance of organ donation.